About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Sunday, January 30, 2011

Hi Everyone! How are you? I just had to make the announcement of making it through the entire work week after my procedure! Whew! Wasn't always easy! There were a couple of times I contemplated calling in sick or going home @ noon because I wanted to just be in bed, but I stuck it out knowing I could make it those last 4 hours of the day! I was discussing the recent story on American Idol with someone, of the couple that was newly engaged, then the girl is in a car accident 2 months before the wedding and is essentially a vegetable now and the young man says, "What kind of man would I be if I left her now"? Wow - I told Mark I agreed, but I also had to agree when Mark said, "Yeah, but she isn't the same person he proposed to". So I go on to tell this person I'm talking to that even though I'm functioning throughout my day, that doesn't mean I feel well enough to be working or doing anything other than being home resting and recovering! This past procedure just took it out of me and I was not feeling myself until the early hours of the morning after the embolization! It is so tough, to get up in the morning for work, when I've been up several times during the night due to medication keeping me awake, restlessness, anxiety, pain .... unfortunately, I bother Mark without meaning to and poor thing, he needs his rest to function @ work too! Every time I get up, I have an entourage that follows me to the bathroom - yeah, Hanz and Bella have to see what Mommy is up to! Actually, there are times that Bella stays asleep, but since we want to make sure she doesn't wee wee on the bed, I pick her up and take her to the pee pad when she is more asleep than awake until she does her duty and gets a treat! Big brother Hanz is right there waiting for a treat too! I am totally out of vacation and sick leave @ work, otherwise I would definitely stay home when I'm not feeling my best! Seems everyone has been passing that crud around, and it was finally my turn to get it! All I needed after having my embolization right? I called my sister Celia to ask her opinion on what to do and she said to call my PCP right away, which I did. He called in a z-pack for me and that really helped!I was recently asked to look in on someone that had a trache put in a couple months ago, an older lady in her early 60's - to see if there was anything I could do to help. The first thing that became clear to me, is that most of her family is not there for her! Seems only the person that asked me to look in on her cared enough to make that move - but the patient needs to be THE MOST IMPORTANT person is this equation! She is going through something very severe and needs as much comfort as possible! I am so grateful to my family that inquires on any way to help me. Mark especially puts up with all my needs besides his own, the household needs and the furry kids needs! Today, Mark fixed breakfast, worked on the retiling of the kitchen floor, took us all to Petsmart, took the dogs for a walk in the neighborhood, came in and fixed dinner, and gave the dogs a bath! Wow! I really need to emphasize that Mark also has to deal with me under the influence of steroids, which means I am always h-u-n-g-r-y, and having hot flashes! To boot, I'm also trying to keep my pain under control and that does not always make me a happy camper! Not to mention the narcotics making me drowsy, so I really need a 2 hour nap when get home from work! Is my husband an angel or what? Actually, Hanz is Mommy's Angel and right now Bella is being a little monster, but she's only 4 months, so we're gonna cut her some slack because she's a very cute baby! Ok, I've gotta go before I fall asleep here! Ciao!

Cyndi

Ok, I just got an e-mail from Sadie, the Patient Coordinator for Dr. Yakes and she says there will be no debulking in March as Dr. Hepworth had hoped. Fine by me! If it isn't time for that, then it isn't time - I trust that the doctors know what is best for me! So, it will be a routine embolization for me in March! Stay tuned for the latest and I hope to pop in a photo or two in here of us w/our babies when possible! Weighed both kids @ Petsmart and Bella is @ 10.2 lbs and Hanz weighed in @ 13.2 lbs! Yikes!

Sunday, January 23, 2011

Hi Everyone! How are you? Well, Celia and I got in from Colorado on Friday night - back from a successful embolization. We're tired. She especially is, since Celia has been fighting a cold, just having gotten back from Italy and never got rid of it! Mom was hoping that maybe Celia's airline ticket could be changed to Marks name if Celia wasn't feeling well enough to travel. I really wanted Celia to go w/me as our little girl Bella is too small to be anywhere but home with Daddy and Hanz! Bless her heart, my sister is a real trouper and stepped up to go with me to Colorado! Yay!

We arrived to cold weather, but nothing a windbreaker or hat/scarf couldn't take care of! After getting our car rental, we headed to Mimi's Cafe for lunch and then headed to my 1:00 p.m. appt. w/Dr. Hepworths Associate, Dr. Cote (I believe it's pronounced Koe-tay). Dr. Cote checked my airways and was happy that all was clear and that my trache looked good! Dr. Hepworth was in surgery all day and not able to see me himself! Hopefully when I return in March we can get our dates together!

Headed over to Park Meadows Mall right nearby as Celia wanted to go to her favorite shoe store! She had bought some shoes in that store that she wore in Rome that were very comfortable, so went back for more, only to find them discontinued! I think she was able to get one last pair, whew!

Celia got some calendars for her sons and I always like to peek in on the puppies @ the petstore!

Meantime, the sky is looking like it would snow any minute and sure enough, here it comes! We left the mall and headed to Whole Foods to pick up something for dinner to take back to the hotel! We spotted some kind of "lemon" in the produce department @ Whole Foods that we had never seen, so we took a picture and Celia took it home to Mark, her son, since he liked the photo she sent him on his phone! Mark wants to plant it in their garden!

Checked in to the hotel and I was just not feeling my best. Celia and I ate our dinner and watched a little TV and I was already nodding off, so I headed for bed. Celia asked if I wanted an alarm to wake me up for my 3:00 a.m. pain med., but I assured her that I would be awake! I woke up @ 2:30 a.m., 3:30 a.m., 4:30 a.m., and finally just got up @ 5:30 a.m.! We needed to be @ Swedish by 7:30 a.m. - so since the temperature had been dropping the night before - Celia thought it was a good idea to call a cab to take us to the hospital in the morning! She did not want to be scraping snow off the windshield while it was 17 degrees outside and probably snowing, so she made arrangements w/the hotel to get us a cab. Come to find, we are allowed a "voucher" for a free cab ride to the hospital! I think it falls under our "Swedish Rate" that we get for staying w/them - this place is the last one in the area that gives the hospital discount!

Anyway, got to the hospital ok, got all checked in - of course had problems getting hooked up to the IV - ouch! I told the nurses people are going to think Mark beats me w/all the bruises I'll have! That reminds me, since I had some bleeds recently, it was decided that I have a blood transfusion, that way in case (heaven forbid!) I had any more bleeds, I wouldn't experience weakness or fainting.

I mainly dealt with Mandi, Dr. Yakes P.A., as his other P.A., Kelly was about to go into labor any time! While I was getting some forms signed, one of my favorite nurses stopped by - Rick Smith! I think it was his day off, but he came in to see me, because we had not seen each other in a while! Rick is an incredibly caring nurse that was so good to me when I got out of a procedure. Making sure I got a clean, fresh gown that wasn't covered in blood, getting me pain meds right away, and putting some Blistex on my very dry lips and ready w/the ice chips! It was great seeing him! I'll put in a photo! Everyone @ Swedish is so hospitable and make their patients feel special! I was just ready to get in for the surgery to be put under! Last thing I remember was scooting over to the surgical bed from the one I was wheeled in on and then woke up in recovery!

Even though it was hell getting the trache I have had to get put on, recovery has been easier when I wake up in post op! Seems next thing I knew I could hear the nurses ask if I wanted something for pain, etc. Somewhere along the line a nurse told me my room was ready and Celia was already there waiting for me! Got settled in to the room and used to be I couldn't wait to jump off the bed on my own to use the bathroom or whatever, but not this time! I was really out of it and kept drifting off to sleep! My left eye was swollen so much, and it felt like I had a grain of sand or something in there that was painful and bothersome! We got the nurse to try and flush my eye out with some saline, but it didn't help much. Told Celia to just order a dinner tray and have her dinner, since I knew I wouldn't be up for eating much! My poor sister was probably bored to death there with me, but she never complained! She spoon fed me applesauce, pudding and apple juice that tasted sooo good! Celia stayed until 9pm or so with me and I told her to go get some rest. It wasn't until 2:30 a.m. that I finally felt better, because by now I had more steroids in my system! In fact, a bit before Celia left, she was suggesting to the nurse to check my chart to see if I was allowed more steroids to bring the swelling down! All the nurses are incredibly helpful and compassionate - Traci was one, and there was another one or two that had taken care of me before! Saba was with me on this trip, but for some reason, Celia and I were not in the mood to take many photos! I was actually a little nauseous the morning of the embolization and I was hoping I wasn't getting the cold everyone here seems to be passing around!

I had one of the techs come in to say hello and asked if my sister was with me on this trip. I told him she was, but that she had already gone back to the hotel! He came by in the morning looking for Celia again, but told him she probably would be by in an hour or so! Someone has an admirer!

I decided to take a shower to get the blood out of my hair and get a little more presentable and to feel better. Shortly after that, Celia showed up and we finished repacking our things and started to head out when an Advocate for Swedish came by to speak to us! Turns out this very nice lady had a lot of things to tell us that Swedish offers that we were not even aware of. I think she mentioned that there are even free food vouchers for when family comes, they can eat in the hospital cafeteria free! Anyway, we left the hospital, got my prescriptions and headed to the car rental place and on to the airport!

On our way back, the plane landed in Austin first, then in Houston - where we deplaned and had dinner. There was a souvenier shop nearby where Celia spotted the cutest purses that look like the Croc shoes I like to wear, so she bought me a pink one as an early Valentine gift and I chose a big red heart shaped Jibbitz (is that what you call those thingies?) that had a lot of little hearts all over it! Cute!

I was just anxious to get home to Mark, Hanz and Bella! Soon as we arrived, Mark drove up and I peeked out and could see Hanz in the front seat! Yay! I ran out there to get in the car and both my kiddos had come to get Mommy @ the airport! We were all excited to see each other - Celia stopped by the car and pulled Bella out of the open window as she squirmed the whole time! We are so glad to be home - it was a rough recovery this time right after the embolization, but we did it with all your love and prayer! Thank you so much for your support, couldn't do it without you! My dear friend Felice called me the morning I got out of the hospital just to check in, so that was really nice!

Well, glad to be home and now it's time to get back to work and look forward to another embolization in March! Take care everyone and thank you for joining us on this very complicated journey!

Sunday, January 9, 2011

Hi Family and Friends!

How is everyone? Wish I were doing better - a few nights ago I woke up because I was starting to bleed inside my mouth! Got up, took the trache tube from my neck, stopped the humidifier, put the stopper plug thing on my trache and headed to the bathroom! When this happens, I get clots in my mouth that I end up gagging on and my nose starts getting runny and I'm trying to spit those clots in a tissue and throw them in the trash and all the while the blood is flowing! Had another one last night when we got home from my sisters, it wasn't too bad - but woke up early this morning having another! This one was bad. Mark was already dressed to go to Mass and I felt I should stay home - but I told Mark he should probably stay home as well. I was bleeding a lot and didn't want to faint and be home alone with the pups! I'm just sharing this with you since I've said having an avm is hell - this is part of it! The bad thing is, I can't open my mouth up very wide, so it's hard to see exactly where the bleeding is coming from! I may have to end up taking an emergency trip to CO to get this taken care of! I actually have an appt. in 11 days, but don't know if I can wait this long if this keeps happening! Meanwhile, my sister Celia was to go w/me on this next trip and she's only been home a week from Italy and was sick most of the time she was there, so she may not be up for a trip so soon!For now, I just threw in a load of wash and after breakfast and a nap, I'll tke a shower and throw in another load of wash! Here's hoping there won't be any more bleeds! I just wanted to enjoy my weekend with Hanz and Bella! I'll keep you updated!

Cyndi

Hi again! I wanted to add more to this blog entry! While there is such horror with this avm - I also wanted to point out the good things going on around me! My wonderful husband is still with me through all the bleeds, waking him up @ all hours and not being able to keep up w/my chores! My children are loving and adorable! Funny, always chasing each other and making us laugh! My favorite thing is all 4 of us in bed together enjoying each others company! Most times Mark is watching TV, and I'm reading and we both take turns playing with Hanz and Bella or giving them tummy rubs! Bella is getting a little better w/the potty training, but needs a little more work.Celia brought me a beautiful Gucci purse from Italy! More importantly though, she took a photo of Shalon and I with her as they visited the tomb of Pope John Paul II! That's all that I had asked her for on this trip, since I have had the good fortune to visit Italy, I didn't know what I could request for her to bring. I was very touched that she said the photograph she took was one of Shalon (fellow avm-er) and I together! The entire Fossum family does so much for us in helping with my avm problem - my family and friends are extremely supportive and that is what helps me get through when I'm going through the "hell" part of the avm. Thanks to all!

Saturday, January 1, 2011

Hi again! Just thought I would post some extra photos from our recent Bringing Bella Home trip! Bella has no fear - she immediately went to say hi to Patty's dogs and to her big brother Hanz! Notice she has the dark fur on her back - that is still some of her baby coat that was hand stripped later by Mark! From what I understand, she is a Belge color, as is Hanz. Brussels come in black, black and tan, red and belge! The latter I believe is like brown and tan, like our kids! We had also recently heard about hand stripping a Brussels coat, to retain the wiry rough coat! They can be clipped, but the fur then will be lighter and softer!

In the one photo, Bella was playing with the tail of Patty's largest dog! No fear on Bellas part! She dives off the end of our king size bed chasing Hanz down the hall! Bella will finish her puppy food and run over to Hanz's dish and start on his! What a moose! She's got sharp little teeth that she fastened on to Marks little toe as it hung off the end of the bed - Bella made a jump for it and hung on Marks toe for a second! We've changed her name to JAWS! No, just kidding! I'm just amazed @ how she is keeping up with big brother Hanz! She's a tough one, but Mommy will make sure she's a girlie girl too! Gotta go! I hear Mark getting after Bella about something! Ciao!

Cyndi

Ok, just because - one more time - here is Bella and Hanz's Christmas photo with Santa Claus @ Petsmart in Sugarland!

Good Morning Everyone! Did y'all survive the New Year without too much of a hangover or lack of sleep? Mark, Hanz, Bella and I stepped out in the front yard @ midnight to bring in the New Year! Mark had a cowbell in one hand, the remainder of the wine from our Anniversary in the other - I had a beer and the two dogs were runing all over, although Bella made a bee line for the front door when she heard the fireworks! We could hear someone not too far away had a live band going for a party - probably on Hewitt Drive!

So, we made it home with our new little bundle of joy and hit the ground running to the work week the next day! We are still in the process of potty training, but worth the hassle for the joy Bella brings to our home! Mark and I will be watching TV when we hear Hanz and Bella chasing each other round and round the house! It's usually Bella chasing Hanz!

We've come to know some of the other Brussels owners in our area, and I knew I had to share our Bella with Linda @ Santa Fe Animal Hospital, since she has 2 Brussels she brings to work with her every day - Bristol and Griffin! I called to make sure it was ok to stop by and she was really excited about meeting Bella! Here are photos of Linda (blond) with Bella and her two kiddos Bristol and Griffin! I'm sorry I don't remember the name of the other girl that works there, but she is holding Bristol and Griffin in some photos! I think in the one photo that Linda is pointing, she was getting after Bristol for growling @ Bella! The othe photo where the two Brussels are facing Linda, she is having a little talk with them about being nice to Bella!

The other day one of the Baliffs @ work asked whether I knew of anyone that would want a 2 year old male Yorkie that was needing a new home. He went on to explain that he owned a rat terrier that was giving the Yorkie a hard time and it was't fair to the dog and thought it would be better to find it a new home. My first thought was calling Linda, I just knew she could help with this situation! I called her and right away she was excited about taking the Yorkie, saying she knew of someone that would give him a loving home! Wow, that is awesome! I just felt great about helping in any way I could and from what I hear, the Baliff delivered the Yorkie to Linda - I think he needed a little tweaking and then it will be given to her friend! Yay!

Well, I'm hungry, so heading to the kitchen to see what I can eat! Wanna play with my kiddos too! Thanks again everyone, I need all of you with us on this journey as we see the end of this avm one day! Take Care, and have a healthy, prosperous 2011!

Would you believe I just realized I could write on a different area of my blog and it's a lot better to read - I had been writing on the "edit" page all along - oops! I'm really a blond, ha, ha! Here are some cute photos of our new little girl! She needed to have the hair around here eyes clipped, and luckily we had brought our own scissors for cutting the dogs hair, so that was able to be taken care of right away!

Patty had some "baby gates" so we put Bella and Hanz in an enclosed area while we went out for lunch! Dorinda had wanted to go to a place called Babes (see photo of Dorinda and Patty) that serves family style and their specialty is fried chicken! It was pretty good and we enjoyed looking around afterwards - there was a train out there - don't know the whole story on why or what, but here you go! My father-in-law retired with the railroad, so there is always the interest in trains. It was cold out, so Patty and I stood shivering while Dorinda and Mark took photos!

We knew we needed to get going, so back to Patty's house to pack and drive back to Houston! Dorinda drove back all the way and we off loaded our stuff and spent the night @ her home in Pasadena! Dorinda always lets us stay in her room and we were quite comfortable with all our kids on the bed! Dorinda gave us a carrier (actually 2, one is a tan carrier, the other might be called small zip up tent that is red - about the size of the inside of a play pen) that she had that were too big for Qubert - her sugar glider - but the perfect size for Bella! It has a "screened area" so she can see out, and it zips up so she won't get out and pee on the bed! Hanz is a big boy, so we don't have to worry about him doing that! Dorinda and Patty both have nice, fenced in back yards, so the kiddos loved running around out there! Oh! I forgot to mention, we stopped @ Buc-ees again on the way back - see photo! Another thing that happened on our way back to Houston - we stopped to get gas and Dorinda and I sat in her car w/the kids while Mark took care of pumping the gas. When Mark stepped away to pay @ the window, I had started bleeding and didn't have a mirror available right away to figure out where it was coming from! I got Dorinda's attention and stepped out of her car so I wouldn't get blood on anything and tried to figure out what to do! I finally got a hold of a mirror and some napkins and found it was an arterial bleed coming from my lower lip! See photo. This is minor compared to the bleed I had the week prior in the early hours of the morning! Dorinda handed me some napkins and I finally found the area I could put pressure on to get the bleeding to stop! That was so unexpected, and unfortunately happened again when I brushed my teeth in the morning! It's times like that - that having a wonderful puppy that gives you unconditional love is worth every penny or problem that might come with a pet! When I get home after a long day of work, there is nothing better than having Hanz tear across the yard to get to me when he hears Mommy's voice! He is so excited to see me and I him!

I think I'll post a couple more photos and then wrap it up for the night! To be continued!